Ezzy is an almost constant source of mysteries–medical and otherwise. Since she is still functionally non-verbal it can be a real challenge to try to understand what she wants or needs–particularly if she is rather upset.
Over the last few weeks Esmé has been under the weather. She has been looking exhausted all of the time, despite the fact that she is sleeping a lot. She has been somewhat tremulous and less accurate in her movements. She spikes fevers here and there, but they don’t hang around for too long. But worst of all she has been having fleeting bouts of what we think must be extreme pain.
It is horrible to watch. I feel like she is telling me that there is a monster under her bed–and I know that there is–but I just can’t get my hands around it.
For example, yesterday I was rocking her at bedtime. Her little body relaxed into my arms–she appeared to be almost totally asleep. And suddenly her whole body tensed, arching backwards. She started writhing and crying. Then she reached up–still wailing in her quiet way–and clawed at my chest and face. Twisting up to a seated position so violently I was afraid I’d drop her, she then started hitting me. Hard. And, honestly, I had a very difficult time protecting myself from her tiny flailing hands.
This has also happened with one of her nurses and my hubby in just the last couple of days.
I’m sure she was in pain. It was clear. But her violent reaction (which is a potential characteristic of her PCDH19 Epilepsy) was pretty upsetting as well, especially considering that she is only 22 pounds, but still hard to control. I just keep thinking that she must feel as though we are letting this happen to her…wondering why we can’t protect her and wanting so desperately to tell us what is wrong…to tell us where that monster is hiding.
We suspect that the pain stems from her kidneys in some way, since she has been passing grit and at least one stone. She has also had some blood in her urine. But the proof of the source of the pain is, of course, illusive. We know she has severe kidney reflux on one side. Her doctors insist that this does not cause pain, however, I keep finding references to pain from kidney reflux online. Stones would make sense, but her most recent ultrasound looked pretty good, honestly. We are also waiting for another urine culture to make sure there isn’t an infection.
The truth is, as seems to always be the case, we don’t really know what it is. And Esmé cannot tell us. For the time being there isn’t anything more to do really. She has seen all of the relevant doctors…We are just waiting for a few more things to pain out.
Honestly, I am starting to be at my wits end with watching her in this sort of pain. The kind of pain that seems not to relent for much of anything at all–that comes on out of nowhere and then disappears just as quickly. I hate this feeling of being unable to act to help her…not just for lack of options, but also for lack of knowledge of what to act upon.
Well, for now I guess I’ll keep looking under all the beds and in all the closets…Maman’s gonna find that monster.